AS Malaysia prepares for an ageing population, the needs of the neurodivergent community and families who have provided lifelong care must be firmly incorporated into the country's planning for ageing, long-term care and community support.
This was the key message from a forum which explored the issue of ageing and families with neurodivergent children.
Organised by the Malaysian Healthy Ageing Society (MHAS) in collaboration with Oasis Place, the forum, titled "The Next Chapter: Planning for Neurodivergent Lives and Ageing Families", brought together healthcare and social-care professionals, caregivers, advocates and stakeholders to address an increasingly important question: what happens to neurodivergent adults when parents and caregivers who have supported them throughout their lives begin to age themselves?
MHAS president Professor Nathan Vytialingam says neurodivergence needs to be understood as a lifelong journey rather than an issue that ends with childhood intervention.
"Malaysia is preparing for an ageing society, but we must also ask whether we are adequately planning for the families who have spent decades caring for neurodivergent and disabled loved ones.
"Their needs do not disappear when a child becomes an adult and neither does the responsibility of ensuring that they can live with dignity, security and meaningful support."
He says many families have spent years focusing on education, therapy and day-to-day care, but find themselves facing a very different set of challenges as parents and primary caregivers grow older.
"Planning cannot begin only when parents reach a point where they can no longer cope. We need to look ahead at housing, healthcare, financial and legal planning, social participation, community support and continuity of care for the next stage of life."
This requires a broader understanding of healthy ageing.
"Healthy ageing is not only about the individual who is ageing. It is also about the families and communities around them.
"If we are serious about building an age-friendly Malaysia, we must ensure that neurodivergent people and their families are visible in that conversation."
Oasis Place founder Dr Choy Sook Kuen says the ageing of caregivers is an issue that families need to confront much earlier.
"Ageing is not something we should begin planning for only when a person becomes older.
"It is a lifelong conversation, particularly for neurodivergent people and people with disabilities whose support needs may evolve across the lifespan."
The transition can be difficult for families that have relied heavily on parents as primary caregivers for many years.
"Parents naturally want to make sure their children are safe and supported, but we cannot assume that parents will always be there to provide that support.
"We need to build circles of support around the individual and the family long before a crisis occurs."
This means bringing together families, healthcare and social-care professionals, government agencies, community organisations and the private sector to develop practical and sustainable support systems.
meera@nst.com.my
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